Wednesday, December 9, 2015

It all felt like a dream.I was suddenly backed into a corner of a room - watching a series of events unfold that, before then, I had only seen on medical TV dramas. But this was my life. And this was my son. And as I stood there, alone, and watched a team of doctors and nurses move at high speed in slow motion...I couldn't move.Intubation.CPR.Screwing an IO line into his femur.Ed answering at work on the first ring - the true miracle of the day.Watching as Gavin's light skinned little body that I worked so hard to protect and keep safe and nourish and moisturize and exercise and more was almost manhandled.Watching as his tiny body was surrounded - and even straddled - for six long minutes as they tried and tried to breathe life...LIFE...into him.My son hadn't even reached six years - and in just six minutes his future was about to end in that room with his Mom backed into a corner...frozen.And here I am again.Frozen.The meal trains have long ended.The mourners have gone back to their lives.The sun has rose and set on this void for over two years.But there's that six minutes that turned into 1, 401,120 minutes that are suddenly invading my thoughts every day. Yesterday, the kids and I created a "Christmas Art Gallery" in the playroom. I hung up huge pieces of colorful art that they made on the wall and, of course, wanted to take a photo. I held up my phone and as I was waiting for Hope to turn and at least look my way (I don't even try to capture perfection at this age!) I saw something."Brian! The craziest thing just happened. I was looking at you guys through my phone to take the picture..." I started."And you saw Gavin?" he finished."Wait, what?" I stared at him."Gavin's in here with us." he said, matter of factly.What I saw was a ball of light almost dance right in front of Hope and Brian. Brian knew before I did what I experienced. It was... well... there aren't a lot of words to describe what it was or what it felt like.Last night, tucking him in, I brought it up."Do you still see Gavin, buddy?" I asked."Sometimes." he said."You are so lucky! I wish I could see him." I replied."He's always here, Mom. Well sometimes he's not here because he's with us when we go out." he told me.It's hard not to believe a six year old who confidently assures you that his brother who died is still "here" - but it really got me thinking."Brian. You don't know this - but you just helped Mommy a lot tonight. Something just occurred to me!" I told him with a small smile."Huh? What?" he replied with curiosity."Know what I think? I'm not sure I really believe in death anymore. I mean - people die and it's terrible and we would rather them be with us, let's be honest. But they only really ended this journey with us. He is alive in his new life with God and Jesus in Heaven! He's alive! We should be happy that he's alive and gets to not only be with us still, but that he gets to have all these amazing experiences wherever he is. He's alive, don't you think?" I anxiously told him."Huh. I like that." he told me.Now if I can just convince my tired body, my grieving heart and my endless tears that this is true.I stepped away from writing this for a while. Left it overnight, actually. Went grocery shopping and picked up items for Brian's big birthday party this weekend. Felt remorse for a nanosecond that I have let a lot go - my house, my appearance, my motivation to do anything, go anywhere - over the past couple months as I succumbed to a depression. I thought about the comment I got that "you only do fundraisers for things that matter to you and your small circle." I did not reply, but for another nanosecond I felt guilty like that was a bad thing. Then for the next few minutes I thought, well I'm pretty sure that it matters for the thousands and thousands of children that will enjoy toys and instruments and games and books and art supplies and movies while they are enduring a long hospital stay at Nemours A.I. duPont Hospital for Children...where, by the way, patients come from all over the world to see their excellent doctors and surgeons. And for hundreds of thousands - maybe more - that will enjoy the future all abilities playground with their siblings, parents, friends while they're visiting...going to therapy...a doctor's appointment or are hospitalized at the same hospital. I'm pretty sure it matters to the thousands and thousands of children who will, for years to come, have access to special needs classrooms all over this area. Classrooms that are furnished with therapy aids and furniture and toys and books. Therapists that will feel better equipped with updated toys and therapy aids so they can continue to help the thousands of children they will see over the years. I don't think the thousands and thousands of families that will come from all over the country - or even the world - to Philadelphia for an organ transplant will judge who the money came from that helped to keep their stay and all that came with it... free. And I'm pretty confident that it will matter to the ONE person who receives an organ transplant from the ONE person ANYWHERE in this world who decided to say YES to organ donation because of Gavin Leong. I can only do so much...and my small circle has pretty big ripples.Gavin's story with us - and the world... it has a beginning and it has a middle. They were incredible, life changing years. But I haven't been able to really see an end. That is, in part, because of all that has been done in his name. SO much has been done and, for that, I am so - SO - proud to be his Mom.But that doesn't erase the fact that I am feeling the enormous loss of his presence in our home and in my arms profoundly - more than ever before. I am functioning and still the same Mommy as before - but I have been so, so sad. It's amazing how quickly your life can completely change in just six long minutes.

23 comments:

My heart...as always...is so moved by your writing, Kate. Thank you for continuing to share your journey with us. Though I never had the opportunity of meeting your sweet little man, your Gavin lives on in my heart too.

Anyone who does fundraising and does it well, unless they are a paid professional, does it for something that truly matters to them, and it affects others profoundly because it was done with passion and with all the love of a heart that has been broken by a situation that they can make better for others. Even professional fundraisers are far more effective at raising funds for a passion. Do not EVER apologize for raising funds for what YOU believe in. It matters. It matters to those kids who will use that playground, who will use those materials, whose families will find some respite in the fact that their kids can be kids. It matters to that family who might just get that miracle. It matters for all the little and big miracles that happen because YOU felt passion for something and did something about it. Gavin still matters. And yes, he is still here. And yes, it still hurts. It always will. But that is because he is STILL loved. and he always will be. (((hugs)))

I'm very sad for you Kate. You do amazing things in Gavin's honor that you should be so very proud of. I would be surprised if you didn't have times of intense grief. Let it flow through you. Gavin's right there with you hugging you throught it. Mich love to you. Take care of yourself.

So sorry that your heart has been struggling lately but as you know grief has it's own timetable. Please do not feel any guilt about who you do or don't fundraise for. We often need some motivation, drive, or passion for a topic to do the extreme efforts necessary to fundraise. Your circle has very big ripples! You can't fix the world and you are successfully doing the more important job of being a wife and a mom. Unfortunately it is too easy for people to throw stones from afar. Thank you for sharing your story and as a fellow RA patient you are inspiring.

Oh sweet mama, tears again. If we were ALL willing to fundraise for a cause near and dear to us, then every problem would be addressed. To the person who wrote that comment, I am sure they are hurting because there is something that matters to them that is not receiving attention. But as I tell my children over and over and over - complaining doesn't solve anything. If they want fundraising for a cause, then why not host a fundraiser? Bless you for your "little circle" and for the ripples that reach further than you can imagine.

Sweet mama, tears again. If we would ALL fundraise for a cause that mattered to us, every issue would be addressed. I'm certain that the person who wrote that comment is hurting because something that matters to them is not being addressed. But, as I tell my children over and over, complaining solves nothing. If they have a cause dear to their heart, why not fundraise for it themselves? Bless your "little circle" and the ripples who touch more people than you can dream of!

Kate-God bless you and your family through this awful time!!! I believe that Gavin is right there with you, Brian, Hope and Ed. Just keep looking for all the signs!! Remember to take care of yourself !!! It alright to grieve....you are such an inspiration to so many!!!! Hope you have a fantastic day!!!!

Kate, you are doing exactly what you have to do. Your tremendous fundraising efforts for the all disabilities playground, Gift of Life, special classroom equipment, organ donation... You inspired me all the way in Argentina to donate $ and resources to different causes. You are doing a tremendous job from your lovely little famil. May God hold you and your entire family in the palm of his hand.

I hope you can block that person who is allowing their negativity to hurt you. Unfortunately that's the part of your post that sticks with me the most because it evokes so much emotion in me to want to defend you. You don't deserve that. I am grateful the majority of your followers are here to support you. We are all allowed our own opinions but the rule we tell our children definitely applies to us adults to; if you don't have anything nice to say don't say anything at all. You are doing great work, Kate! We all appreciate you making the journey a little bit easier for any family who is touched by your fundraising

My husband of 36 died last October. As hard as it is for me, it can't compare to your loss. Anyway, I've been having a rough time lately and something happened last weekend that convinced me he really is here with me, my 2 daughters and more importantly our 3 little grandchildren. I had always hoped he was, but now I have proof. As hard as it is to go on without him, I'm comforted knowing he hasn't really left me. Your fundraising helps so many and will for many years to come. You're an amazing woman and mom and when you're sad and in a rough patch, Gavin is right there with his arms around you.

First I want to echo all the comments about how wonderful your fundraising is and how anyone who does it well does it for something that matters, but maybe more importantly if we would all do half of what you do the world would be a different place. Second I want to tell you that while I have lost a child, your story, your example, your shining spirit (even in the midst of your own grief) reminds me to hug my children, support my husband, and take care of me and do my best not to get caught up in the day to day mire of things. Gentle hugs to you, know you matter to so many "strangers", know you effect, your ripples are bigger than $ bigger than you can ever possibly know.

Oh Kate I'm so sorry. Some people are so strange. Fundraising has to be personnel for it to be effective. For example would I donate to a park in a hospital that's not even in the UK? No. Would I donate for a park in honour of Gavin yes. Because I "knew" Gavin his entire life which is why I always donate for Gavin, so the comment you received about fundraising is ridiculous. I love what Brian says about Gavin and I truly believe him, as you know it's been almost 13 years since we lost our dad and sister, there is no time limit of grieving ESPECIALLY if it's your own child. As hard as it is on my sister and I, it's a drop in the ocean compared to our mum, or any parent that's lost their child's pain. I've always said, and I always will, as lucky as you are to have had Gavin, Gavin was just as lucky to have you as his mum. xox

You are such an amazing person. How dare someone criticize how you decide to donate the funds you have raised. Don't ever feel the need to explain yourself and just remember, your son gave life to many others through his generous donation of organs. I'd love to know what this person has done to help others.

I lost my 3 years old son 6 months ago. The wave of grief comes and goes at the most unexpected times. Just to get by each day is already a blessing for me. So Kate, I really really admire your strength to carry on despite your loss. And on top of that you are fundraising for a cause. No cause is a small cause. Please don't let anyone makes you think otherwise. You have the biggest heart and I'm sure Gavin is looking down at you proudly from Heaven.Take care and please continue to write. Your writings has encouraged me to look to the future positively. You've been such an inspiration to me. Thank you.

I cannot believe that people actually have the nerve to make such remarks to you. Thank you for sharing Gavin's story and your family. I have been following for a while now and find so much inspiration in what you write.

Who I Am...

Hi! I'm Kate. I'm a positive thinker, an amateur blogger, a jokester, and a reality TV junkie. I'm also very lucky to be a stay at home Mom to Gavin and Brian. I have a husband that has a big laugh, a big heart and a big talent for cooking. (Thank God) Our life is not always easy, but it turns out it's more than I ever dreamed it would be. I write about Gavin's disability, his miraculous progress, Brian's successful recovery from a peanut allergy and a speech delay, my Rheumatoid Arthritis and infertility journey and our crazy, incredible, roller coaster of a life. I also remember and honor our daughter, Darcy, who we met after 5 1/2 months of my pregnancy.

I feel honored that you're here to get to know us.

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Gavin's Playground Project

Gavin's Playground Project was born from my desire to see an "All Abilities" playground built at Nemours/A.I. duPont Hospital for Children in Wilmington, Delaware. This is the hospital where Gavin spent a lot of time during his life... and where he ultimately died, surrounded by friendly and familiar faces. To mark the one year anniversary of his death, I held a fundraiser on April 5, 2014. You can read all about it in THIS post.

We raised a LOT of money, but not enough for a playground! If you would like to contribute to help make this playground a reality - so no kids will ever have to sit on the sidelines watching their peers play - you can contribute directly to the hospital through the Chasing Rainbows fundraising page HERE. Your donation will go directly to the hospital for the playground and is tax deductible. You can also create your own fundraising team page and start collecting donations in honor of anyone you want!! There is also a mailing address on their page if you prefer to mail a check. Designate your contribution in memory of Gavin Leong - or write in that this is for the playground so your dollars will go to the right place. Thank you for your support of Gavin's Playground Project!

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Gavin's Trust Project

I created "Gavin's Trust Project" to help support Gavin's friends who receive services from the Chester County Intermediate Unit in Pennsylvania. I wanted to continue to try to "make the impossible... possible" for kids like Gavin, knowing well how hard it can be to get much needed "special needs" items. It makes me happy to know that even after his death, Gavin continues to help others. Click HERE to learn more about the Trust Project! All of your donations, big and small, will be added to Gavin's Trust Project to help therapists and teachers get what they need for children in this program. You can write a check made out to CCIU and mail it to: Chester County Intermediate Unit, c/o Deb Hiller, 455 Boot Rd., Downingtown, PA 19335. Please be sure to add "Gavin's Trust Project" in the memo. Thank you on behalf of me and my little superhero!